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Does anyone here have transverse myelitis, or know of anyone who does?

Can you share your experience with it and how it has affected you?

All in the name of research! Thank you, thank you!

Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

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This is all new to me, so pardon any errors. I had a transverse myelitis episode for sure, I don't know where that's going to end up yet. Anyways, it started with incredible burning pain in my pelvis, complete loss of bladder and bowel function, then complete loss of all feeling in the pelvis, legs feeling like I walked up a mountain, then legs and ankles giving out on me. And when the feeling started coming back, it was the feeling of being sodamized with a sharp knife. Tremors, and lhermitte's syndrome. I think that's all of it.

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

I too had a transverse myelitis episode with my first (and only thus far) relapse 2 months ago. Oh, did my symptoms run the gamut. Pardon me if I forget anything; the list is extensive.

- cutaneous numbness from the breast line down (front and back of body) that started on my left side and over the next week or two spread to my right

- weakness in lower left leg

- weakness in upper right arm

- significant loss of function in the last 3 fingers of right hand

- urinary hesitancy and bowel constipation

- painful spasm of right arm and shoulder (the only pain thus far, thank God)

- Lhermitte's (still persisting)

- spasms of toes on right foot and muscle fasciculation of right quadricep (both mild)

I have recovered from most. The Lhermitte's is still there, my right hand is fully functional again but the finger joints are a little stiff, and the skin on my left leg and hand does not have normal sensation---it's not numbness, but it's hard to describe. Just not normal.

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

Paralyzed from the chest(above the nipple line) down and in a wheelchair for 4 months. On a cane for another 6 months. I have a numb band around my chest and my pinky and ring finger are 90% numb on the right hand as is my lower right arm up to the arm pit. My left arm isn't as bad. I have 75 to 90% feeling from the thighs to my chest and 40 to 70% feeling from my thighs on down. I can't run. I experience nerve pain mostly in my legs and in my arms. I have some bladder issues, meaning that I can't hold it very long, and I have constipation a lot. Sometimes I have banding but much less the last 10 years.

I have mostly lived a normal life. I work full time and for a long time I was very active with biking, tennis, paintball, hiking, etc...

In 2002 I started experiencing major back pain. I cut out activities and stopped lifting things over 30 pounds. I also started taking medication for the first time.

All was well until a few months ago when I started experiencing fatigue when the weather got hot. Also, my back pain came back with a vengeance. In hindsight I realize that stress seems to be the cause of my back pain. My nerve pain comes back strong when I have back pain. MRI's are all clear of lesions, though I do have degenerative discs(but not where my back pain is).

How brave you are. I loved your "Cheers!" at the end of that long list of symptoms. Yikes.

I appreciate your help and hope you get lots of relief soon. It's so surprising that nothing showed up as far as lesions on your spine...

Hang in, OK? And never lose that smile. You certainly reminded me to stay positive through this journey.

Thank you for that!
Diana

Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea

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